Glyncoch girl defies illness to perform at concert to raise awareness and cash for fellow sufferers

Glyncoch girl defies illness to perform at concert to raise awareness and cash for fellow sufferers

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FOR most 11-year-olds, music is all about the latest chart-topping boy band or floppy-haired teenage heartthrob.

But for one Glyncoch schoolgirl, music is her way of fighting back against, and raising awareness of, the rare illness that has plagued her for almost her entire life.

At just three years old, Jess Mardon, a Year 6 pupil at Ysgol Pont Sion Norton, was diagnosed with myasthenia gravis or MG, an illness which turns her without warning, from a bubbly, happy child, into a listless, floppy “rag doll” in seconds.

The neuro-muscular condition, which sees the immune system attack the muscles and nerves, affects just 10,000 people in the UK, and often leaves the petite schoolgirl feeling isolated and discriminated against.

Fed up of having to explain her condition, which also severely affects her eyes, causing them to droop and swell shut, Jess has turned to music to get her message across.

And, along with her girl band The Wild Roses, she is set to take to the stage at Trallwn Workingmen’s Club on March 17, to perform Jessie’s Song, to help raise funds for fellow sufferers in Wales.

Jess, who plays bass guitar with the band, which is made up of her sisters Chantelle, 16, and Zoe, 13, as well as friends, told the Observer that the gig was her “chance to feel normal”.

“One minute I can be fine, but when it [the symptoms] kicks in, my legs go all floppy, like I can’t control them and like they’re falling,” said Jess.

“I sometimes have to use a wheelchair and people look at me stupid, and that upsets me.”

Referring to the dark glasses she has to wear due to her condition, the Justin Bieber fan added: “People have also told me to take my sunglasses off, they don’t seem to understand that I’m not well.”

The illness can often leave Jess bed-bound for days on end, and sleeping for up 24 hours at a time. Her last poorly episode saw her lying on the sofa for the whole of December and Christmas period, as well as her birthday, and left her too weak to open a mountain of presents which remain untouched to date.

As a result, her school work and attendance also often suffers, but the determined youngster remains upbeat.

Her mam Rose, who also has three grown-up sons, described her daughter as “an inspiration”.

The 49-year-old said: “There are too many ignorant people in the world, and we’ve had quite a bit of discrimination – mostly because people haven’t heard of MG and don’t understand.

“But Jess deals with it all really well, and she’s determined to perform at the charity night.

“She just takes everything in her stride, and when she’s ill and can’t go to rehearsal or something, she says ‘Mummy, why can’t I just go in my wheelchair because there’s nothing wrong with my arms’. I’m really proud of the way she copes.”

Jess’ fundraising evening will be at Trallwn Workingman’s Club on Saturday, March 17, from 7pm. For tickets, costing £5, contact rose.marden559@btinternet.com